Health Statistics User Group

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  Accessing ONS births and deaths dataJul 02, 2013 2:49 PMLiz Rolfe
  RE:Accessing ONS births and deaths dataOct 15, 2013 2:24 PMJean Robinson
  RE:Accessing ONS births and deaths dataOct 15, 2013 4:26 PMNeil Bendel
 

1.
Accessing ONS births and deaths data
From: Liz Rolfe
To: Health Statistics User Group
Posted: Jul 02, 2013 2:49 PM
Subject: Accessing ONS births and deaths data
Message:

The ONS has recently sent out new Data Access Agreements (DAAs) which cover the lawful access to ONS and NHS births and deaths data for public health statistical purposes only. The DAAs cover both current and future holdings of the data by Local Authorities and NHS organisations. Anyone wishing to access these datasets who hasn't recevid the new DAAs should contact iros@ons.gsi.gov.uk

This letter explains:

  • lawful access;
  • changes in the new data access agreements;
  • how to gain access to the Primary Care Mortality Database (PCMD) provided by the Health and Social Care Information Centre (HSCIC).

1.  Lawful access
Deaths data provided via PCMD and birth files contain both ONS and NHS data and need to meet the legal requirements of both organisations. Vital Statistics (VS) tables contain ONS data only. These data are supplied to Local Authorities and NHS organisations for public health statistical purposes under:
a)        section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012); and
b)        regulation 3 of the Health Service (Control of Patient Information) Regulations 2002.

Access to the VS tables is supplied under 1a).

2.  Data Access Agreements
The person taking overall responsibility for the data, either the Director of Public Health or Caldicott Guardian, must sign the main data access agreement. If the management of the data is to be delegated to another responsible person then they must also sign. All other persons having access to the data must complete a short declaration of use. Before signing, they should first read the conditions of supply in the main agreement. They must be given a copy of the main agreement to keep. The names of all those signing short declarations of use should be appended to the short declaration list. The short declaration list should be signed at the bottom by one of those signing the main data access agreement.

ONS and the HSCIC require assurances that good Information Governance (IG) practices are being adhered to by asking the person taking overall responsibility for the data to confirm that their organisation has met or exceeded the NHS IG Toolkit standards or is certified to ISO 27002. Please note that the former is a requirement for access to PCMD.


To ensure data governance continuity, ONS requires confirmation of where data supplied to NHS Organisations prior to April 2013 are now held and you need to specify this on the DAA. Previous data supply covers the monthly Public Health Birth and Mortality Files plus NHS number files, and data extractions from PCMD, the Annual District Birth and Death Extracts and the VS Tables. If data previously supplied has been destroyed please confirm via email to:
iros@ons.gsi.gov.uk

3.  Access to PCMD
In the main DAA please provide the name of the person requiring download access to PCMD. We would expect the permissions to be granted to the person given delegated responsibility for the data within your organisation but if you wish to nominate an additional person to have download access then please include their details on the main DAA.

We anticipate that the enhanced PCMD will be available at the end of June 2013 and will include data for 2013 to the new file layout. From this date ONS will continue to provide monthly updates to PCMD and provide an annual refresh. The annual refresh for 2012 should be available during August 2013 via PCMD to the new file layout.

Following authorisation of your completed data access agreements by the data custodian at ONS the details of the person(s) requiring download access to PCMD will be passed to the HSCIC who will set up the new accounts.

The quarterly and annual birth extracts and annual VS tables will continue to be provided direct from ONS.

Please email any queries you have to
iros@ons.gsi.gov.uk

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2.
RE:Accessing ONS births and deaths data
From: Jean Robinson
To: Health Statistics User Group
Posted: Oct 15, 2013 2:24 PM
Subject: RE:Accessing ONS births and deaths data
Message:
I would be interested to hear if anyone else has had this problem and how they dealt with it.
I have used the PHMD file for PCT registered deaths to calculate SMRs for our 60 practices. A small number of practices have higher than expected SMRs and have been asked to investigate. One practice got in touch to say that they disagreed with my Observed Number of Deaths and asked me to send a list of the deaths so they could check that they were all registered with the practice. I sent them a short disclosure form to sign and then thought I had better check with ONS, in view of the increased nervousness about sharing data, that this would be OK. The response was that sharing a list of deceased patients with the practice would be disproportionate response and that we should seek an alternative. I argued that this was serious public health risk and the NHS/ONS  had attributed these deaths to the practice and teh practice has a duty of care to these patients so theoretically I am not disclosing any data they do not already have and could legally share but am still waiting for a response. I would appreciate any suggestions as to how I can help teh practice without disclosing teh names of the patients.







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3.
RE:Accessing ONS births and deaths data
From: Neil Bendel
To: Health Statistics User Group
Posted: Oct 15, 2013 4:26 PM
Subject: RE:Accessing ONS births and deaths data
Message:
This is the explanation I got when I raised exactly the same issue with the HSCIC back in March 2013:

"Amendments to the Statistics and Registration Service Act (SRSA) by the Health and Social Care Act come into force on 1 April 2013. From this date the amendments change section 42 (4) of the SRSA to allow ONS to disclose births and deaths information to local authorities and specified health bodies.

However there are some important changes about the purpose for which this information can be used. The Act specifies that the births and deaths information can only be disclosed by ONS to health bodies and local authorities if either it consists of statistics or is for the purpose of producing or analysing statistics and is for the purpose of the performance of functions in relation to the health service. This means that the use of data provided by ONS is restricted to health purposes and can only be used for producing or analysing statistics, that is the purpose is to produce results that are quantitative and qualitative, aggregated and representative. In considering whether the use of the information is a statistical purpose, it is helpful to refer to the Data Protection Act 1988 (s33) which defines statistical and research purposes as data that are not processed to support measures or decisions with respect to particular individuals. In this context, individuals can also relate to individual corporate bodies including businesses.

As the data can no longer be used lawfully for non statistical purposes, for example list cleaning, customers who need to determine 'fact of death' should use the link below which provides information on a number of services that can help: http://nww.connectingforhealth.nhs.uk/demographics. For further information and advice contact demographics@nhs.net."  

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